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2 Page iii Autism Identification, Education, and Treatment Second Edition Edited by Dianne Berkell Zager Long Island University LAWRENCE ERLBAUM ASSOCIATES, PUBLISHERS 1999 Mahwah, New Jersey London EBSCO Publishing - NetLibrary; printed on 10/4/ :45:42 AM via UNIVERSITY OF NORTH TEXAS

3 Page 3 Chapter 1 Autism: Historical Overview, Definition, and Characteristics J. Gregory Olley Scott S. Gutentag University of North Carolina at Chapel Hill Tom is a 10 year old boy who avoids looking directly at others, resists being held by his parents, does not speak, and plays with only one toy, which he repeatedly spins. Kathy is a 24 year old woman who has a steady job, lives in an apartment, and enjoys activities at the recreation center. Both Kathy and Tom have autism. Their similarities and their differences are better understood now than in 1943 when Dr. Leo Kanner introduced the term early childhood autism. Yet many puzzles remain in this most puzzling of developmental disabilities. To introduce this examination of autism, we review the viewpoints and findings that have shaped our understanding of this disorder. The changing definitions, characteristics, and approaches to treatment are reviewed. This information is the context in which our current understanding of autism is described throughout this volume. History Today, the term autism is usually associated with the syndrome described by Kanner, but its use began much earlier in psychiatry. Bleuler (1911/1950) used the term to describe a withdrawal into fantasy in schizophrenia. Kanner's (1943) use of the word autism reflected his emphasis on the social deficits of the disorder, but it was in other respects an unfortunate choice of terms, because it confused the syndrome he EBSCO Publishing - NetLibrary; printed on 10/4/ :47:07 AM via UNIVERSITY OF NORTH TEXAS

4 Page 4 described with schizophrenia. The 11 children whose lives Kanner recounted in 1943 showed characteristics that have since been found to be quite different from schizophrenia. The term autism was introduced in the 20th century, but accounts of children with similar behavior have been known for many generations. Schopler (1983) gave the examples of Romulus and Remus, who legend says founded Rome, and the feral children Kamala and Amala found by the Reverend Singh in Midnapore, India in Many accounts of special education trace the beginnings of the field to the work of Itard and his student, Edward Seguin, in teaching Victor, the ''Wild Boy of Aveyron'' (Itard, 1894/1962). Itard described Victor and other children who had deficits in attention, perception, and memory as well as a poor sense of imitation, which interfered with establishing peer relationships (Carrey, 1995). As Schopler pointed out, many of these early reports accepted uncritically the legends that the children had been raised by wolves. Such reports did little to clarify the origins of childhood psychopathology, but they did document that others observed children with very deviant social and language development long before Kanner did. Current views of autism differ sharply with some of Kanner's observations, but many of his points remain essential to today's perspective. Kanner saw the social disorder as the cardinal sign and even chose the word autism to convey that emphasis. Characteristics, such as avoiding the gaze of others and showing no recognition of a parent's absence, continue to be viewed as classic symptoms. Later writers described this social deficit as withdrawal. However, Kanner (1943) noted that unlike people with schizophrenia who withdraw from a distressing world, those with autism show "extreme aloneness from the very beginning of life." He gave the example of the "failure of the child to assume an anticipatory posture upon being picked up," and he described the children as "from the start anxiously and tensely impervious to people" (p. 249). Rather than withdrawing from a difficult world, Kanner saw people with autism living in "a world in which they have been total strangers from the beginning" (p. 249). Kanner's (1943) original description also pointed out the isolated play, unusual language traits, insistence on ritual behavior, and resistance to change that continue to be regarded as central traits. In addition to these insights, Kanner drew some conclusions that have not stood the test of time. For instance, he noted the absence of physical stigmata of the children in his sample. Recent research with larger samples has demonstrated that people with autism may have other identifiable medical disorders, including epilepsy, mental retardation, and genetic conditions, such as fragile X syndrome (Rutter, Bailey, Bolton, & Le Couteur, 1994). Kanner's mistaken first impressions led him to conclude that the children had "intelligent physiognomies" and that their faces showed "serious mindedness." Appar EBSCO Publishing - NetLibrary; printed on 10/4/ :47:27 AM via UNIVERSITY OF NORTH TEXAS

5 Page 5 ently from this evidence, he determined that children with autism had "good cognitive potentialities." This myth of the autistic child as a latent genius has endured and caused great distress for family members and teachers who have nearly always failed to find the key to unlock the alleged genius. Since Kanner's original 1943 report, dozens of fad treatments have offered the promise of a cure, but none have withstood the standards of careful research. About 66% of individuals with autism function in the mentally retarded range of intellectual development, and approximately 25% to 30% develop a seizure disorder some time during their lives (Rutter et al., 1994). Some treatments that do show promising effects are reviewed in this chapter and treated in more detail later in this volume. Another misconception that Kanner introduced, and later writers such as Bruno Bettleheim perpetuated, was the view that parent behavior caused the autistic condition. Although he noted that characteristics of autism were present "from the very beginning of life," Kanner (1943) also observed the parents in his sample to be from upper middle class backgrounds and to exhibit a cold manner in dealing with their affected child. Bettleheim (1967) picked up this theme and built a theory of the nature of autism in which the emotional coldness of parents, particularly mothers, was the central cause. Bettleheim had been a prisoner in a Nazi concentration camp, and this experience apparently influenced his view of autism. Rimland (1989) summarized Bettleheim's view "that autistic children had been mistreated by their mothers in about the same way in which Nazi concentration camp prisoners had been mistreated by their guards, thus giving the children (or the prisoners) feelings of hopelessness, despair, and apathy, and leading them to withdraw from contact with reality" (p. xiii). Rimland and other writers of the 1960s played an important role in changing the prevailing psychoanalytic view of autism that had been popularized by Bettleheim. In 1964, Rimland, influenced by his experience with his own son with autism, wrote the classic book Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior. Rimland found no evidence to support the view that autism is psychogenic or psychologically caused. Instead, he put forth a neurologically based approach, which opened the door for the burgeoning biomedical research of the late 20th century. In addition to publicly removing from thousands of parents the burden of guilt for causing autism, Rimland organized parents to form what is now the Autism Society of America, a parents' organization with state and local chapters throughout the nation. The departure of the psychoanalytic approach led to the rapid growth of research based on other viewpoints. In the late 1990s, behavioral, cognitivedevelopmental, and medical research and treatment are changing the lives of thousands of people with autism. EBSCO Publishing - NetLibrary; printed on 10/4/ :47:49 AM via UNIVERSITY OF NORTH TEXAS

6 Page 6 Behavioral Approach Beginning in the 1960s, researchers applied research findings from the psychology laboratory to teach a variety of skills to children with autism. In the late 1990s, the integration of basic and applied behavioral research has led to greater knowledge of the nature of autism and more effective services. Early studies on the effects of reinforcement and other environmental factors have led to the emphasis on teaching practical skills for community living throughout the life span (L. Koegel, Koegel, & Dunlap, 1996; R. Koegel & Koegel, 1995). Cognitive Developmental Approach The basic deficits in cognitive processing, such as language, social, and related learning, have been the basis for another contemporary approach to autism. Some writers, such as Rutter (1983), have identified cognitive deficits in language, abstraction, and sequencing as the primary deficit in autism. Others, such as Hobson (1989), have stressed problems in social relations and affect. The neuropsychology of autism has helped to explain patterns of cognitive functioning. For example, contemporary research is examining the relation between neuroanatomy and early symptoms of autism (Dawson, 1997) as well as executive functions, such as flexibility and planning or organization (Ozonoff, 1997). Medical Approach Recent medical research has contributed in important ways to the knowledge of the organic basis of autism. The neurological (Minshew, Sweeney, & Bauman, 1997), neurochemical (Anderson & Hoshino, 1997), and genetic (Rutter, Bailey, Simonoff, & Pickles, 1997) abnormalities present in autism, as well as medicines that can treat at least some autism symptoms, are now far better understood than they were even a few years ago. For example, studies of the autopsied brains of people with autism have found abnormalities in the limbic system and the cerebellum, areas known to be linked to memory and emotion (Bauman, 1996). Defining Autism The characteristics of autism as first described by Kanner have been revised and broadened in subsequent years (Schopler, 1983), although current definitions still reflect Kanner's important observations. Currently, autism is viewed as a disorder that exists on a spectrum from mild to severe. EBSCO Publishing - NetLibrary; printed on 10/4/ :48:10 AM via UNIVERSITY OF NORTH TEXAS